on controlling my car. The game was all I could concentrate on. Meanwhile, my grandson was not only doing everything I was doing, he was giving me hints on things I could do as well as carrying on a conversation with three other people in the room. If that didn’t demonstrate to me the loss of cognitive ability I was suffering, nothing could.
But Alzheimer’s disease presents itself as more than a short-term loss of memory or forgetfulness, it begins with a major loss in one’s ability to recall and reason. More importantly, it can progress to the state were the sufferer is often confused about where they are or what they are doing. It can cause them to forget who their loved ones are. Having said this, the disease is not something that is a natural extension of growing old. Also, the progression from loss of memory to full-fledged dementia is not a given. Understanding exactly what separates simple loss of memory from aging versus true Alzheimer’s disease is important and will become much clearer as the reader progresses through this volume.
You, Your Family and Alzheimer’s Disease
It’s tough to worry about the world around you and what the future will bring when you or someone close to you has developed Alzheimer’s disease. While the implications of losing one’s touch with reality are overwhelming, the disease has other wide-ranging effects. It decreases the quality of life not only for the sufferer but also for family members, for whom the impact is equally devastating. One’s own family is the predominant cornerstone for the care of the Alzheimer’s sufferer. For example, it has been estimated that in Canada the psychological impact of having the responsibility of being the primary caregiver is immense. Between 40 and 70% of caregivers have been shown to experience psychological problems because of the pressures they face in having to assist someone with the disease. With 15–30% of caregivers, these responsibilities led to full clinical depression. There is little doubt that these numbers can be extrapolated to family caregivers worldwide. The number of hours family caregivers lovingly sacrifice is great and increases as the disease continues to progress in the family member they care for. In Canada, the total time dedicated to caring for family members with the disease will approach 800 million hours per year. When this is coupled with annual healthcare costs reaching up to 150 billion dollars within the next 25–30 years, it becomes clear why we are facing a true Alzheimer’s epidemic.
Healthcare Workers and Alzheimer’s Disease
The frontline workers who deal with Alzheimer’s disease are nurses and other healthcare workers who strive daily to make the patients’ and their families’ lives more bearable and livable. With the loss of the persons’ intellectual awareness, harmful prejudices, real and imagined, rise to the surface. In the worst cases, physical violence can accompany verbal assault. In spite of this, healthcare workers must rise above such routine onslaughts to their person, race or beliefs. This aspect of the disease and the toll it takes on caregivers of all stripes is rarely recognized by family members whose primary focus is on their sibling, father, mother or grandparent. It is also of little concern to the person with the disease who often will be trying desperately to hang on to whatever reality remains in their lives. Through no fault of their own, they have lost the ability to separate appropriate from inappropriate behavior. We forget too that the healthcare worker is bound by laws and legalities that are designed to meet the needs of the many while often ignoring their own safety and mental health. Typically the last ones considered are those who deliver patient care. These are just some of the unquantifiable costs of the disease. So like a stone thrown into a pond, the behavioral effects of Alzheimer’s disease start from the patient, rippling ever outward, disrupting the calm waters of whomever resides in that human pond.
Quality of Life: An Important Issue
As the disease progresses, the quality of life of the Alzheimer’s sufferer will diminish. However there are aspects that friends and family can take into account to improve the individual’s quality of life. There are things that should be done and things that should not be done. Some of these are summarized in the following graph which gives some indication of factors that can improve the quality of life for those afflicted with Alzheimer’s disease (Figure 1.5).
Figure 1.5. Things that can improve the quality of life. Data from Banerjee, S. et al, 2010a,b.
Thus it is clear that being allowed to make their own decisions is paramount to the individual with Alzheimer’s disease. Being able to make their own choices can improve their quality of life. Being loved by the ones they care for, or cared about, is also a major element in ensuring a good quality of life. Spirituality, clear communication and respect are also important overall but less so than love and decision making. If we look at the other side of the coin, then we can see issues that diminish the quality of life for the person with Alzheimer’s. Just as the former elements make life better, the following make life worse: treating the individual as a child, emphasizing the disease itself, stopping them from doing things or making them do things. These are summarized in the following graph (Figure 1.6).
Figure 1.6. Things that can decrease the quality of life for the Alzheimer’s disease sufferer. Data from Banerjee, S. et al, 2010a,b.
Treating a grown-up as a child is offensive to anyone. This doesn’t change just because a person has Alzheimer’s. This element is the number one factor that negatively affects quality of life. Emphasizing that the person has a disease also impinges badly on quality of life. As one would expect from the primary and positive importance of choice, stopping the Alzheimer’s sufferer from doing things and denying them choice are negative factors affecting quality of life. Excluding them from joining in with others in day-to-day events or special occasions is also a negative factor. While exclusion apparently is less impactful than treating the person as child, it is still an important element.
Clearly the percentages given in the previous two graphs are somewhat arbitrary because they are based on the personal opinions of a diverse group. But they do serve as a guide. The key thing to remember is that quality of life comes from a package of these elements, not just one or two, or even three. For example, giving the person choice is of little value if that choice isn’t given out of love and respect. The aforementioned issues are also not the only things that affect quality of life. So it is important to think about what different aspects of the individual’s life are impacting the quality of that life and focus on improving those that are supportive while diminishing the negative elements.
Plaques and Tangles
How does this destruction of the Alzheimer’s brain happen? All of our memories are stored in our brains, primarily in the way the nerve cells are interconnected but also via their interactions with other brain cells that are present. (The term “neuron” is more commonly used by scientists as opposed to “nerve cell”.) In certain parts of the brain, the neurons begin to malfunction. If we make a very simple analogy, the brain functions like an electronic device with all sorts of electrical connections. When connections are broken, the device may fail or only be able to perform certain functions. If the neurons in the brain can’t talk to each other or pass along messages in the correct way, then the brain can’t operate correctly. With the progression of the disease, neurons also begin to die. When brain cells no longer communicate with each other, this can lead to their death. This cell death of neurons leads to brain shrinkage and actual “holes” in areas of the brain.
Your next question might be, “How do brain cells fail and die?” Since neurons and other brain cells fail and die in normal brains as well, this is an important question. In fact this cell death is a critical part of normal brain development in utero. In the embryo,
